Diagnosed in 2009 at 36 and I still make the cut for this group of MM fighters! Where have you all been the past 14 years? I’m so blessed to be here and happy to share this journey with you all! Thank you for starting this group.

Hi, I am feeling good and would like to start traveling more to see friends and family. We prefer to travel by car and would like to have extended stays of a month or more. My concern is that I am currently on DVRd monthly treatments and need to coordinate monthly treatments at a different location. I’ve heard you need to set up a Dr at the other location to see, receive blood work in order to get treatments. Any suggestions? Thanks!

Let's begin with this topic: Telling your children, parents, or grandparents about the diagnosis What was your experience like sharing the myeloma diagnosis with your loved ones? Was this difficult for you? Any unusual reactions or responses? For those of you who have young children, did you use any analogies or simple vocabulary to tell them? How did it differ from how you told older children or loved ones? Please comment and share your experiences below.

Looks good. Thanks for the invite.

Great idea. Thank you

I'm really excited about this group, and looking forward to connecting with other caregivers who I can relate with. Having myeloma under age 55 is so much different.

Great idea Audrey, thanks for creating this group and sending the invite.

Thanks for the invite. With MM having an average age of 65 to 70 at diagnosis, a lot of the issues faced by those of us well below that threshold are vastly different. It will be great to share stories and experiences from our walks and support one another.

Thanks for the invite, looking forward to meeting and gaining some insight from other people in this space. Have a great day.

Let's go, young pup group :)

Thank you for starting this group. I feel like this is the exact type of group I've been searching for and in a platform I can readily follow. :-)

Hi everyone! Welcome to our new group. I'm excited about this one. Here's a list of brainstormed topics we could talk to each other about in the group. What are you interested in tackling first? Any other suggestions? Sexual Wellness (Maintaining Intimacy) Deciding to Have Children (Freezing Eggs, Side Effects of Medicine on Potential Pregnancy) Financial Concerns and Resources (Retirement, Grants, Loans, etc.) for Younger Myeloma Community Estate Planning, Wills and Guardianship Presenting the disease to your children/parents/grandparents Getting back to work post-transplant Managing side effects and life balance (Revlimid, Dera, etc.) Regaining independence and increasing activity post-transplant How much and how you share about MM with work, friends, etc Female Hormemones post SCT Maintaining Fitness Mental Health/Therapy Dealing with the Stigma of Being Diagnosed with Cancer Coping with Self Esteem Issues Grieving the Life You Thought You'd Live (Career, Life Goals) Nutrition

Happy to be here and happy to support and be supported!

Hi - I am the caregiver for my husband who is current 54. He started treatment in 2014. He has had an auto-transplant in 2015. He got a short partial remission. Has had 4 lines of treatment and getting ready to get his CAR-T cells back on May 15. I am not sure what to expect but hope it works to give him a break from treatment for a while. His recent BMB has shown a change towards high-risk markers that are new.

Has anyone recently had Car-T using Carvytki? If so, how long did it take for your cells to come back, after collection? My cells are coming back this week. They were collected on March 20th, so 8.5 weeks. Chemo next week, then into the hospital Memorial Day weekend. I recently received my cells and spent 2 weeks in the hospital. I am now having some issues with ortho static blood pressure. Has anyone else experienced this?

I have been on Revlimid and Dex now for 3 years and my paraprotein is keeping down, but wanted to ask if anyone has experienced balance issues. I also experience significant pain in my back,worse on the days I don't take Dex. I try and walk each day and am doing exercises from my physio.

Hey everyone, curious how much dex and how long you all are tolerating it. I was on 24 mg spread out over 3 days an dit was way too much. Now just taking 4 mg week, can still feel it but so much better